Mail Call: Trigeminal Neuralgia

I'll be frank here: I am the world's worst correspondent. Honestly, my closest relatives have to call me to find out if I received their important emails. And don't ask the age of that lovely stack of unused stationery on my desk.

However, even a broken clock is right twice a day.

Below is a recent comment from a visitor and I'd like to respond in a new post because I have had many visitors lately with Trigeminal Neuralgia.

Dear Mrs. Happy Housewife,

A friend of mine found your website while she was searching the web to find out what Trigeminal Neuralgia is. I too have TN and under went MVD surgery on July 1, 2009. I have to tell you that my surgeon did a much better job at sewing me back up. I can hardly look at your picture, but I am very squeamish. It has been just over 6 months since my surgery and I am having some re-occurring pain after being almost completely pain free during the month or so prior. It's been devastating to say the least. Tears came to my eyes when my friend told me about your website. As you probably know, it's difficult to explain this condition. It would be wonderful to have someone to share with. I've started the rounds of doctor's appointments and scheduled MRIs.

I hope that you are recovering quickly. It takes some time so be kind to yourself and take it easy. If you're anything like me, I couldn't touch the "hole" for months (for those who don't know...it's covered by a metal plate, but there is an indention under the scalp). It just freaked me out. Now I'm an old pro at it. My hair has grown out a few inches and with my other hair down (which is also long), no one can tell that anything ever happened.

I'll keep you in my prayers!

Sincerely,

TNFriend

 

Dear TNFriend,

Thank you so much for your comment. It is wonderful to hear from another Trigeminal Neuralgia patient. I hope you are currently doing better than when you wrote me. 

It is now a little over three months since my surgery. I know my scar photo was rather gross, but what looked so terrible was mostly surgical glue. The scar is much better and less Dr. Frankenstein now. It's also very smooth. My hair, like yours, covers the scar and the indentation in my skull. I don't touch the area because doing so makes my ear ache. As for the rest of my recovery, I feel normal again, though I don't have as much energy and it's unpleasant to hang my head down. I'm certainly not as afraid now of brain surgery. I feel a bit like a wine bottle with a popped cork.

I am so sorry to hear that you are not painfree, especially since this is a most horrible pain we live with. And it is terrible to have your hopes dashed when you expect the surgery to cure you. As to the success of my Microvascular Decompression: practically none. I'd say none at all, but, truly, I can eat and smile and laugh with a bit less pain than before my surgery. I think I have had far less improvement than most patients of MVD because of the fact that my trigeminal nerve was not in a typical situation for this problem. 

As to side effects of the surgery: the attempt to deaden the nerve a little means I often use eye drops in my left eye and for a while I heard a frequent ticking noise in my head; now, I sometimes hear a roaring (like the sea) in my left ear. I've been told that healing can last more than six months. My surgeon has suggested that we try Stereotactic Radiation Therapy, but I am still waiting to see if I have any more improvement - to the chagrin of my husband who would like me to stop hurting.

I'd love to hear from you again. I'm also on Twitter, if you'd like to chat there. Thank you for taking the time to leave me a comment and I appreciate your prayers. You are in my prayers also.

Blessings,

Mrs. Happy Housewife